VEDS Partners and Spouses
This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences.
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April 2024
VEDS Parents
If you are a parent of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center, and Abby DeLong, VEDS parent and patient advocate.
Pain Management
Are you or a loved one recently diagnosed with Marfan syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
LDS Women’s Health Beyond Family Planning
This webinar will be presented by a panel of medical experts and moderated by Melissa Russo, MD. We will discuss women’s issues beyond family planning, including, but not limited to, endometriosis, perimenopause and menopause, hormonal support, and uterine prolapse. There will be time to get your questions answered. While the content will be tailored to […]
Heartworks St. Louis
You are invited to join us for a special evening as we celebrate the 15th Anniversary of the Heartworks Gala St. Louis on Saturday, April 27th, as we come together to support the life-saving mission of The Marfan Foundation and build a brighter future for our loved ones affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and […]
May 2024
Support for Young Adults with Marfan, VEDS, LDS and related conditions
Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you. This group meets on the first Wednesday of every month at 7 pm EST.
Marfan Connect
Are you diagnosed with Marfan syndrome or a related disorder? Are you between 30 and 50 years old? Would you like to connect with others living with Marfan syndrome and related disorders for support and to share resources and information? If so, this group is for you.
Walk For Victory – Northern California
Join the Walk for Victory movement! Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. Together, we raise awareness and help families get the best medical care from leading experts. Together, we help fund events and programs that make life better for our community: […]
Walk For Victory – DC
Join the Walk for Victory movement! Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. Together, we raise awareness and help families get the best medical care from leading experts. Together, we help fund events and programs that make life better for our community: […]
Teen Game Night
This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in the fun. We will be playing games using the Jackbox game series.
VEDS Connect
If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day.
VEDS Parent Support Group for Adult Children
If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center. * If your child is under 18, please register for the VEDS Parents Support […]
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